Advocating for oneself, a family member, or an issue that matters to you or SBA is easier than you think! The key is to utilize available resources, be clear in what it is you are seeking, and be polite and persistent in your efforts. Making a difference for people with Spina Bifida can happen anywhere!

SBA provides you with these “top ten tips” for ways you can engage in advocacy at home, in your own community, to bring your voice forward to the benefit of yourself, loved ones, and other individuals and families affected by Spina Bifida.

  1. Recognize that you are an expert in Spina Bifida – no one knows better what people with Spina Bifida need and deserve than you! That means that you have knowledge, understanding, experience, and insight that others do not; they need to hear from you directly so they can know what policies, procedures, situations, or circumstances need to be changed to better meet the needs of people with Spina Bifida and to help improve quality of life for those affected. You have the power to do this just with your own voice…and we can help!
  1. Review this advocacy section on SBA’s Web site. The Web site is great tool to use to stay informed on issues of importance to the Spina Bifida Community, as well as a great tool to learn about advocacy opportunities. It’s our job to stay on top of the issues for you.
  1. Sign-up to receive advocacy email action alerts from SBA and respond to the occasional requests to take action. Every day SBA is working to improve quality of life and quality of care for people affected by Spina Bifida – but we need your help! Action alerts are only issued a few times a year when your elected officials in Washington, D.C. are in a position to make a difference for our community and they need to hear from people in their districts and states. SBA makes it really easy for you by giving you sample written messages and linking you directly to your elected.
  1. Recruit your friends and family to advocate for the Spina Bifida community. More and more people are realizing the power they have to influence policymakers – but that means the Spina Bifida Community needs to bring more voices calling for action on our concerns. Asking your friends, family members, and neighbors to sign-up for SBA’s advocacy email action alerts or to join the SPEAK for SB program helps us immensely.
  1. Know who represents you – in the state legislature and in Washington, D.C. and how to reach them. One of the easiest, but more important ways you can make a difference is to know who represents you at all levels of government. You can look up your Members of Congress right from our website!
  1. Keep up-to-date on what your elected officials are doing by reviewing their Web sites and signing-up for their newsletters and other notices. Most elected officials have website, electronic newsletters, and other forms of communication to keep their constituents (the people who live and vote in their jurisdictions) up-to-date on key issues and inform them of their positions. These newsletters and other notices are free – just sign-up for them on your policymakers’ Web sites.
  1. Email or call your elected official. You don’t have to wait for SBA to send you an email alert – you can email or call your policymakers at any time on any issue that concerns you. By writing an email or calling to urge your policymakers to support a specific piece of legislation or policy priority, you are letting elected officials – who work for you – know that, as a constituent, this is an issue you care about. Each elected official’s Web site gives you instructions on how to submit correspondence and SBA provides you with specific tips for emails, meetings, and calls in our tips and tools section.
  1. Submit a letter to the editor of your local newspaper to help educate your community and elected officials about Spina Bifida. Just as all politics is local, all local politicians and their staff read their local papers and follow their local news, including reading the letters to the editor to keep their fingers on the pulse of the concerns of their constituents. A letter to the editor of your local newspaper on Spina Bifida will help educate policymakers and your community about the nation’s most common permanently disabling birth defect. Letters must be concise and specific and should include a local angle, such as including state statistics on Spina Bifida. Each local paper has different rules for submission of letters to the editor – typically these guidelines can be found in the front section of the newspaper on the editorial page or on the online version of the newspaper. Also, some papers have different letters sections in print and online. If you email a draft of your letter to, we will be happy to review it for you if you would like.
  1. Attend a town hall meeting. One of the most effective – and most underutilized – ways to communicate directly with elected officials is to attend their town hall meetings. These events allow policymakers to gather input from their constituents and learn more about their interests. To increase constituent participation and expand their reach, many lawmakers recently have given constituents the option to participate via telephone. By signing up for your elected officials’ newsletters (#6) you will be informed when a town hall meeting will be held in your area. If you need assistance regarding what to say, questions to ask, or what materials to bring, be sure to utilize the Top Ten Tips for Attending Town Hall Meetings.
  1. Invite a policymaker to attend your local Spina Bifida Chapter meeting, or seek a meeting with your elected officials at their local offices. A terrific way to communicate with your policymakers is to invite them to a local Chapter meeting or Walk-N-Roll for Spina Bifida event or seek a one-on-one meeting with them at their office. The best time to do this is when they are scheduled to be back in the district on a “district work period” (for federal elected officials this is usually around a federal or religious holiday, or in August), because they will have more time to meet with their constituents. A local meeting is a great opportunity for the policymaker to learn more about the effects of Spina Bifida and to be introduced to affected individuals and families.